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How can I help my 15 year olds debilitating migraines from EDS?

Posted by candace317 @candace317, Mar 25, 2023

Hi, I’m desperate to help my 15 year old with severely painful migraines along with joint and back pain. Medicines prescribed are no help. She also has POTS and while we follow the traditional lines of treatment for both, she’s declining, in pain, and depressed.

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mikaylar | @mikaylar | Mar 28, 2023

It sounds like you are in a good place for pain management now. Why not deal with the headache in Jacksonville or a good headache center? Call around and see what they offer.

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candace317 | @candace317 | Mar 28, 2023
In reply to @mikaylar "It sounds like you are in a good place for pain management now. Why not deal..." + (show)
@mikaylar

It sounds like you are in a good place for pain management now. Why not deal with the headache in Jacksonville or a good headache center? Call around and see what they offer.

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Thank you for that. We are not in a good place for pain management even though I am doing all of the things. We only see Childrens' Healthcare very rarely and the medicines prescribed are not helping my daughter. She is on hospital homebound education due to severe joint pain. It is so frustrating to not be able to help her.

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mikaylar | @mikaylar | Mar 28, 2023
In reply to @candace317 "Thank you for that. We are not in a good place for pain management even though..." + (show)
@candace317

Thank you for that. We are not in a good place for pain management even though I am doing all of the things. We only see Childrens' Healthcare very rarely and the medicines prescribed are not helping my daughter. She is on hospital homebound education due to severe joint pain. It is so frustrating to not be able to help her.

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You need to go to one of the large university hospitals. It will involve travel though. Mayo in Jacksonville is closest I would image. Maybe they can treat her pain and headache.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 28, 2023
In reply to @candace317 "I was told that Rochester was the place to go for POTS and EDS. Jacksonville is..." + (show)
@candace317

I was told that Rochester was the place to go for POTS and EDS. Jacksonville is much closer! Would that location have a pediatric pain rehab program like Rochester?

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@candace317, @mikaylar is right. Mayo Clinic in Jacksonville, Florida has a specialized EDS clinic as well as a Pain Rehab program and Headache Clinic. The specialized Children's Center is located in Rochester, Minnesota. However, for your 15 year old, I think the Mayo Jacksonville Ehlers-Danlos Clinic with Dr. Knight adn team would be well suited.

Read more about the Florida Ehlers-Danlos Clinic here: https://connect.mayoclinic.org/blog/ehlers-danlos-syndrome/tab/history/

To inquire about an appointment, start here: http://mayocl.in/1mtmR63

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